Tips and Tricks for Successful Research Recruitment - A Toolkit for a Community-Based Approach - SC CTSI
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Tips and Tricks for
Successful Research
Recruitment
A Toolkit for a
Community-Based
Approach
Tips and Tricks for Successful
Research Recruitment
A Toolkit for a
Community-Based Approach
Suggested citation:
Kubicek, K. and Robles, M. (2016, November 11). Resource
for Integrating Community Voices into a Research Study:
Community Advisory Board Toolkit. Southern California Clinical
and Translational Science Institute grant UL1TR001855.
2 Tips and Tricks for Successful Research Recruitment
Contents
Introduction..............................................................................................................................4
Preparing for Success..............................................................................................................5
Setting Goals..........................................................................................................................5
Walking in Their Shoes...........................................................................................................5
Hearing from Your Participants ..............................................................................................7
Study Staff Selection and Training..........................................................................................8
The Role of Community Partners in Recruitment................................................................9
Compensation..........................................................................................................................9
Compensating the Individual..................................................................................................9
Compensating Community Partners......................................................................................9
Communicating about Your Study.......................................................................................10
Communicating to Potential Participants............................................................................. 10
Communicating to a Potential Community Partner............................................................. 10
Digital Platforms- Social Media and Mobile Technologies................................................12
Large Clinical Trials.................................................................................................................14
Addressing Recruitment Challenges...................................................................................18
Confusion About the Study..................................................................................................18
Lack of Awareness...............................................................................................................18
Lack of Access......................................................................................................................18
Personal Objections, Fear, Distrust, or Suspicions..............................................................19
Keys to Retention ................................................................................................................19
Maintain Communication ....................................................................................................20
Listen....................................................................................................................................20
Be Convenient .....................................................................................................................20
Maintain a Positive Attitude..................................................................................................21
Know the Protocol................................................................................................................21
Appendix A: Recruitment Flyer Example 1..........................................................................22
Appendix B: Recruitment Flyer Example 2.........................................................................23
Appendix C: Recruitment Flyer Example 3.........................................................................24
Appendix D: Creative Brief ...................................................................................................25
Appendix E: Study Summary Example 1............................................................................26
Appendix F: Study Summary Example 2............................................................................27
Appendix G: Study Summary Example 3...........................................................................28
Appendix H: Study Summary Example 4............................................................................29
3 Tips and Tricks for Successful Research Recruitment
Introduction
Despite the investment in eradicating racial and ethnic health care disparities, enormous
inequalities still exist in the United States across multiple domains, including access to care
and use of services, disease prevention, chronic diseases, health status and quality of care.
Whites continue to represent a disproportionate amount of research participants, as compared
to any other ethnicity.1 A 2015 analysis of 2,579 clinical trials found that 19% of trials were either
terminated for failed accrual or completed with less than 85% expected enrollment.2 This has
multiple implications: 1) researchers have difficulty answering questions in a meaningful way
due to the loss of statistical power, 2) there are missed opportunities for individuals to benefit
from new interventions and medications, and 3) time, funds and other resources are wasted.4
Whether you are conducting a traditional clinical trial or a trial in the community, there are
common strategies you should consider when recruiting participants for research. This toolkit
introduces ideas on how to prepare early in the research process in order to increase the
probability of meeting your participant recruitment goals. Subsequently, it will provide specific
recommendations for large clinical trials, and the use of social media as well and community
based research. It will also address recruitment challenges and keys to high retention.
The recruitment toolkit highlights effective strategies for investigators and others to work in
diverse populations. Developed by the Southern California Clinical and Translational Science
Institute (SC CTSI), the Clinical and Translational Science Awards (CTSA) hub housed at the
University of Southern California, and Children’s Hospital Los Angeles, this toolkit aims to
develop greater capacity and success in research participant recruitment, particularly in the
recruitment of underrepresented populations such as ethnic minorities.
About the Clinical and Translational Science Awards
The CTSA were initiated in 2006 by the National Center for Advancing Translational Science
(NCATS) branch of the National Institutes of Health. The more than 60 CTSAs around the U.S.
are charged with catalyzing academic health centers (AHC) to create a supportive and efficient
infrastructure to accelerate the translation of promising clinical practices and innovations into
community settings. An important part of this infrastructure is the integration of community
organizations, clinics and others into the process in order to ensure that the research conducted
at these AHCs is meaningful to the populations for whom they are intended. CTSAs are required
to have a structure, which can solicit and integrate community input into the research process.
To do this successfully, research institutions must collaborate with community organizations to
identify and understand public health needs.
4 Tips and Tricks for Successful Research Recruitment
Preparing for Success
Throughout the toolkit, we use the word Walking in Their Shoes
‘participant’ to refer to those who choose to There is nothing worse than assuming that you
partake in research. We believe that referring know everything about a certain population.
to research volunteers as participants instead Even if you have worked with that population
of subjects is the first step for researchers and in the past, you may find that over time,
their team to approach the research recruitment trends and values have changed. For example,
process differently, using a more community we have colleagues who have worked with
friendly approach. Viewing individuals as active, adolescent and young adult men who have sex
willing volunteers and contributors to your with men (or gay/bisexual youth) for more than
research instead of passive subjects can help fifteen years. Although they have previously
guide your recruitment and retention approach conducted longitudinal studies with this
through the entire research. population, when they received a new grant
to conduct a multi-year study, they conducted
Setting Goals new formative research to identify changes in
As you consider the feasibility of your study, demographics (e.g., where young men of color
the participant recruitment protocol should be hang out), identity (e.g., new terminology for
forefront part of the planning from the start. sexual and gender terms such as genderqueer,
cisgender), and barriers to care (e.g., stigma,
• Is your participant recruitment goal realistic transportation).
for the population and the region in which
you are conducting your study? There are many factors about the study and
your participant criteria that can affect:
• Is your recruitment approach tailored to
the interests and priorities of the target • Where you recruit.
population? • How you communicate about your study.
• Is your study timeline realistic for the • How you approach individuals.
number of participants you plan to recruit?
• How you compensate your participants.
• Are you allocating time and money towards
• The structure of your study team.
better understanding and developing
the necessary partnerships to gain the These factors will ultimately determine
trust of that population before you begin whether you will reach your recruitment goal. It
recruitment? (If you do not already have is important to consider each and every one of
experience with or access to the particular these factors when planning your recruitment
population you are trying to reach). protocol and as you confront recruitment
challenges in the midst of your study.
• Have you developed an alternative plan for
recruitment in case your first plan does not
A variety of participant and study factors can
succeed?
alter your recruitment strategies, therefore
these factors (see Table 1 and 2, next page)
should be considered in the development of
your recruitment protocol.
5 Tips and Tricks for Successful Research Recruitment
Table 1: Participant Characteristics to Consider for Developing Recruitment Protocol
Participant Description/Examples
Factors
Age Communicating with an adolescent, an adult, or an older adult can be vastly different,
and where you recruit these individuals varies based on age. For example, social media
and other digital recruitment methods will likely be more effective with a younger
population.
Language Language might seem like an obvious factor when developing a recruitment plan but
there is much more to this than simply translating from English into another language.
Spanish for example, uses many different terms for the same thing depending on the
country. Literacy level is another very important component to keep in mind when
translating. Even when using English, care must be taken to carefully define medical
terms that the general population might not be familiar with or understand.
Cultural Understanding the cultural norms of your participants is key in developing an effective
Norms recruitment strategy. For instance, within the population of interest, is the deci-
sion-making done as a family, a community or individually? In a study conducting phone
surveys with adult Korean women we found they were most responsive when an adult
Korean person called and less responsive when a young person called.
Geography Certain cities and towns have their own culture, popular locations, safe and unsafe
areas of town and common hangouts for people of certain ages. Whether the region is
urban or rural can also affect your recruitment strategy. For instance, in a rural farming
area, recruiting during harvest season might not be effective as farmers and their
families are working longer days.
Gender/ The ways in which you communicate effectively with women can be different from the
Gender ways you communicate with men. Remember, women are from Venus and men are
Identity from Mars. What motivates one to participate can be different from the other. There-
fore, what you highlight about the study and the images you use can draw more men
or more women to your study. In addition, society is now beginning to recognize that
gender is not always a binary identity – there can be fluidity between the two primary
genders. Similarly, transgender identities are also gaining greater visibility in society.
New terms that are particularly popular with youth populations, such as genderqueer
and intersex, are also becoming more common. Therefore, researchers working with
these populations need to be careful not make assumptions about gender and the
ways in which someone self-identifies.
Years Living in This factor is often overlooked. Designing a recruitment strategy for a foreign-born
the U.S. person who has been living in the U.S. for 20 years versus someone who just arrived
5 years ago can be completely different, even if they are originally from the same
country. Their understanding of and comfort with participating in anything official like re-
search can be different. Their understanding of the English language will likely also vary.
Socio Someone with a higher economic status most likely also has a higher level of formal
Economic education, which means they most likely already have an advantage to others in their
Status understanding of research and access to research studies. It probably would not take
as much effort to reach this population as it would to reach those of the working class
and those in lower socio economic status. It is also probable that those of a lower
socio economic status have less flexibility in their job for time off to participate in a
research study, which means your study would have to be more accommodating if you
want to have a diverse population (e.g., scheduling at nights or other non-traditional
hours). Likewise transportation or the lack of it can also be an issue.
Legal Status Those with no legal status in the U.S. are probably the most difficult group to reach.
in the U.S. They do not want to be identified or stand out in any way for fear of being deported.
The simple term, “research” gives the idea of being investigated which can be a very
scary thought. Finding other terms to explain research and the research process can be
helpful. Also reinforcing the concept of anonymity or confidentiality can make people
more open to participating.
6 Tips and Tricks for Successful Research Recruitment
Table 2: Study Factors to Consider for Developing Recruitment Protocol
Study Factors Description/Examples
Condition Being Are there any stigmas associated with the condition you are studying? For exam-
Studied ple, mental health and HIV issues can be stigmatized among family members and
in the general community. Therefore, people with these conditions may not be as
willing to participate for fear of others finding out.
Study Participation The level of risk and type of involvement required to participate in a study is a
Requirements big factor in the volunteer’s decision of whether to participate. Participating in a
10-minute survey, an interview, or a focus group is viewed differently than more
invasive procedures, such as a blood draw, taking medication, or having to see a
doctor for other medical procedures. A onetime participation versus a study that
requires multiple months or years of commitment is also very different. The latter
would require more time and effort on your part to explain the study process and
benefits before getting someone to agree to participate.
Study Budget Allocating study funds from the start to provide extra incentives such as health
services, health education, food/refreshments can provide a more pleasant
experience for your participants, which can help with retention. Having the funds
and flexibility to do community based recruitment and data collection can help
you reach underrepresented communities that may have time and transportation
constraints.
Hearing from Your Participants during recruitment). Ideally, you are consulting
You may not be able to “walk in their shoes” and reevaluating your recruitment strategies
but there are other methods to hearing from during all phases of your study, but the pre-
your participants. You can do so in a variety of proposal phase is by far the most effective
ways, depending on your timeline and budget. when trying to save time and money. Doing so
will allow you to determine whether your study
is feasible in terms of the timeline, budget and
• Convene at least one (or several) focus
protocol proposed. For example, our friends
groups with individuals who meet your
working with young men who have sex with
study criteria or with individuals who
men (YMSM) populations had originally
work closely with your potential study
proposed to recruit a cohort of Filipino young
participants.
men using the same recruitment techniques
• Convene an advisory board that can help used for Latino and White young men. They
inform your recruitment approach and other found that these strategies were not effective
areas of your study (see our Resources and had to work with their funder to explain
for Integrating Community Voices into the challenges. Eventually, they received a
a Research Study: Community Advisory separate grant designed to figure out the best
Board Toolkit for more information), or; approaches for recruiting Filipino and Asian
• Partner with a community organization who young men into research studies.
works closely with the population you are
trying to reach, as they can form part of This time and effort upfront will help you avoid
your research team. situations where you are unable to complete
You can take one or several of these approaches the study due to insufficient participation
to receive feedback during any stage of or asking your funder if you can reduce your
your study (pre-grant proposal submission recruitment participant goal.
[formative research], pre-recruitment and
7 Tips and Tricks for Successful Research Recruitment
Study Staff Selection and • The research study goals in general (not just
their specific role and responsibilities).
Training
The recruitment and consenting team play a vital • The protocol and why it is important to follow
role in the recruitment and retention success of
• Any and all financial implications for the
your study. You could have developed a great,
potential participant
community-friendly flyer, script and consent
form but if it is not delivered in a thoughtful • Who to turn to if they have questions.
manner, then the message will be lost. What The training topics for your research team,
we mean by thoughtful is that careful thought particularly those who will have direct
and effort has been dedicated to selecting contact with potential research participants,
who will be doing recruitment, how (i.e., tone, should include the following:
language) and where recruitment takes place • Humans subjects certification
(phone, grocery store, schools, etc…), keeping
in mind your study and participant factors. –– Review and provide examples (using
your study) for:
• Ethics in research
Studies have shown that people will most
• Voluntary nature of participation
likely respond favorably to someone similar
• Beneficence (do not harm,
to them, and this can be someone similar in
maximize possible benefits,
age, ethnicity, gender, or life experiences.10
minimize possible harms)
Therefore, having a study team that reflects
• Privacy and confidentiality
your target population may increase your
possibilities of having success in recruitment. • Overview of the study goals and topic
In our experience, this is truer for some
populations than others, and the only way to • Recruitment, consent and data collection
find out is by asking your target population protocol
early in your study. Many times, however, it –– Include scenarios and practice for:
has been our experience, that the interpersonal • How to approach a potential
skills of the study staff can be a greater factor participant
in recruitment success. Hiring individuals who • How to address:
can easily adapt to any situation, who are –– A hesitant participant
flexible, friendly, outgoing and professional –– A “no” response
is very important. It is not just about hiring –– A willing participant
someone of the same ethnicity as the –– Questions asked by participants
population you are trying to reach, they must • How to use the study’s data
possess the interpersonal skills necessary for collection tools
this type of work.
• Cultural Competence (see our
Cultural Competence Toolkit for more
Providing formal training for your staff is very
information)
important and often overlooked. With all the
Include role-plays, modeling of successful
pressures of getting your research underway
and unsuccessful approaches and time to
as soon as possible, it is easy to simply have
review and digest the material. Training for
your staff complete the human subjects
the research team should be ongoing and
training online, review the protocol and learn should include a review of the protocol and
all the recruitment materials on their own. ways to address any challenges phased by
However, in order to have the best results you the research team as they begin recruitment
want to make sure everyone in your team is on and data collection. In order to identify these
the same page about: challenges, it is important that you meet with
your research team on a regular basis.
8 Tips and Tricks for Successful Research Recruitment
The Role of Community Partners in
Recruitment
The obvious role of a community partner in • Form part of your advisory board.
research is identifying and recruiting potential
• Form part of the research team.
research participants. Although they can
certainly play a significant role in these tasks, • Be a consultant who provides feedback on:
there is more they can and should participate –– Your recruitment materials
in. For instance, as mentioned earlier, asking a –– Outreach strategies and study conduct
community partner to be a part of the formative –– Participant number goal
work before your proposal is submitted can • Provide training to your research staff on
help you present a feasible study design and cultural sensitivity and community outreach
timeline. A community partner can: approaches.
Compensation
Compensating the Individual • Communicating the lab results from a
Compensation should be monetary and it clinical trial procedure can also be useful
needs to a fair according to what is being asked to a participant. We have heard from the
of the participant; taking into account the time community that they would like to know
commitment and risk of the study. the results from the medical procedures
performed during a research study, even if
There are other ways to thank your participants
it is simply the results of vitals, blood work
that may be of equal or more value to them.
or weight.
It is important to keep in mind the needs
and conflicting priorities of your participants. Including additional compensations such as
Without being coercive (and in line with your these will allow for a more positive experience
IRB standards), ensure that the compensation for the participant, which in the end will make
is clearly communicated in recruitment individuals more likely to participate in future
materials and/or when potential participants are trials or influence others, such as friends or
approached by the research team. Examples of family to participate.
appropriate compensation may include:
Compensating Community
• Providing lunch or refreshments during
a focus group can be another form of
Partners
Collaborating in research with community-
thanking your participants in addition
based organizations such as advocacy
to monetary compensation, which
groups, clinics, associations, or other non-
demonstrates value for a person’s time and
profit organizations is a great way to know
comfort.
get to know your target population better,
• Providing a free medical examination or receive feedback on your research protocol
consultation can be of great value for and tools, and it is an effective way to gain
someone who does not have medical access to potential research participants. These
insurance or simply does not visit their organizations have already gained the trust of
doctor on a regular basis. the community, and; building on that trust is
• Providing health education about the invaluable. As a researcher, you should build a
relationship with these types of organizations
condition being studied may be of great
as early in your career as possible. Community
value to your participants.
9 Tips and Tricks for Successful Research Recruitment
partnerships should be viewed as long term, demands on clinics and other community-
ongoing relationships (not project based). One based organizations, and conducting research
relationship can lead to another and as your is usually not a top priority. Even the most
research evolves so too will your community minimal disruption in their workflow should be
partnership and their role in your studies. compensated such as asking front-desk clinic
See our Toolkit for Developing Community staff to distribute research fliers to patients.
Partnerships for specific steps and tips on Clinic staff are already tasked with coordinating
how to begin a community partnership. other paperwork and patient flow logistics, so
adding another responsibility is not as simple
As contributors to the success of your as you may think. Not having these recruitment
research, the community organization needs partners and plan in place pre-proposal can
to be compensated, no matter how great really alter your proposed study plan, IRB
or small their involvement. There are many protocol and not to mention your study budget.
Communicating about Your Study
Communicating to Potential material. The best way to develop recruitment
Participants tools is to work alongside your target population
You get one opportunity to present your and/or with people that work day-to-day with
research to potential participants, therefore, that population. You can do so by conducting
the development of recruitment material and focus groups, convening an advisory board or
scripts should not be taken lightly. Before partnering with a community organization that
you develop the marketing materials for your can provide feedback and give you suggestions.
study, it is helpful to complete a creative brief Communicating to a Potential
(see Appendix D) to help guide you through
Community Partner
the important goals and considerations for
We encouraged you earlier to partner with a
an effective recruitment tool. It is not just
community organization in your study and in
putting information on a flyer or cutting and
particular for your recruitment efforts. How
pasting from your proposal to inform your
you present your study to an organization
recruitment script. The participant and study
is also important. It is not as simple as
factors mentioned earlier really come into play
presenting your study in the same way that it
here. A single word can turn someone away.
is articulated in a research proposal, abstract or
Certain colors and images (or lack thereof) can
a PowerPoint developed for your colleagues.
draw or discourage potential participants. For
It is also important to note that engaging a
example, among the Latino community, using
community partner is a bit different from asking
the term “investigacion” for research can bring
a fellow researcher to collaborate on a research
about suspicion or fear, as it sounds like an
proposal. This is particularly true when you are
investigation of their residential status will be
cold calling an organization. Before reaching out
conducted. Using other terms like, “estudio”
to a potential community partner, consider the
(study in English) can make a big difference.
following questions:
Who approaches the participant and where
he/she is approached can also affect how your 1. How and where do you begin to talk about
study information is received. There is no perfect your study?
template for this, given the variability among 2. How do you not overwhelm them with
studies and the population. In Appendices A-C, information?
however, you will find examples of successful 3. How do you avoid confusing them so that
recruitment flyers that can be adapted to they are not left wondering, what exactly
help develop a first draft of your recruitment would be my role here?
10 Tips and Tricks for Successful Research RecruitmentTable 3: Tips: Communicating to a Potential Community Partner
Begin with a brief • This is a simple email, that introduces who you are, your project health topic
introductory email and overarching goal and asks for an opportunity to meet with him/her to
learn more about their organization, the work that they do and explore the
possibility of collaborating.
• Include bullet points if appropriate to describe your study.
Develop a one-page • Appendices E-H provide examples of a study summary. This tool provides an
study summary overview of your study using simple terms, bullet points, images and color.
• When someone has had an opportunity to read your study summary, they are
more informed and therefore better able to understand and engage you in a
conversation about your study and their potential role. It gives them time to
digest the information and formulate questions for you and possibly explore
interest within the organization before even meeting with you, which will
make for a more productive first meeting.
Use layman’s terms • This is particularly important in these first outreach attempts.
to talk about your
• We cannot stress this enough, no matter how common certain terms may
study
be for you, step back and think, are there other ways to say or describe the
same thing? For example, if your study is looking at health disparities, using
the word disparities is not a good idea, say differences in how ethnic/racial
groups are receiving services, getting diagnoses, or becoming ill, etc…
When and how you • At this point you might want to also give them the option of talking over the
follow up is also phone. It could be a better option for them if they are busy or they might just
important want to know more about your study before taking the time to meet with you
in person.
• Either way you want to eventually (sooner rather than later) meet with them
in person. If email does not work, do not be afraid to use the old fashion
telephone.
Remember • Once you have had the opportunity (over the phone or in person) to briefly
that building introduce yourself and your study, the next step is asking the person to tell
relationships is a you about their organization, their focus area, target population, programs/
two way street services, community needs and research experience.
• It is your turn to listen and genuinely (regardless of the outcome) show
interest in what they do and what they have to teach you about community
needs. Recognize they are the experts in their field. Ask them to tell you
about their work, it may become clearer at this point what could be their
potential role in your study or you may realize that it is not a good match after
all.
Communicating/ • It is very likely that the participants you are trying to reach have no or very
creating awareness little knowledge about research, how it works and why it is important. In
about research in fact, you are very likely to encounter negative perceptions or misconceptions
general about research.
• Be prepared to provide information or answer questions about the role of
research in health and society. Once that is communicated then people may
be more open and willing to hear about your particular study and collaborate.
Communicating/ • It is very likely that the participants you are trying to reach have no or very
creating awareness little knowledge about research, how it works and why it is important. In
about research in fact, you are very likely to encounter negative perceptions or misconceptions
general about research.
• Be prepared to provide information or answer questions about the role of
research in health and society. Once that is communicated then people may
be more open and willing to hear about your particular study and collaborate.
11 Tips and Tricks for Successful Research RecruitmentDigital Platforms- Social Media and Mobile
Technologies
With the ever-growing popularity of digital for example if you find that it is highly utilized
technology and social media among by your target population. Be sure to iden-
populations of all ages and economic status, tify how your audience members prefer to
it is no surprise that digital technology is receive information on these platforms (i.e.,
now also being used as a tool for research photos versus videos). Also, be observant of
recruitment. There are countless digital tools the type of language they are using, as; this
and social media outlets (and many more being will be valuable information when you de-
developed as we speak), regardless of which sign your online ad or post. Finding the gate
you use, there are overarching strategies to keepers or “opinion leaders” online is also
guide the use of these platforms for successful another reason to monitor before designing
participant research recruitment. your recruitment strategy. These individuals
may be disease advocates, popular bloggers
It is important to note that although digital about the health topic you are researching
technology and social media have been around or the gate keeper can simply be a popular
for many years, their effectiveness in research website among the demographic population
recruitment is in its infancy. As a result, we are you are targeting. Partnering and/or consult-
still learning about the most effective ways to ing with these individuals can certainly be
use these tools, which audiences respond to an option. Two free tools that allow users to
these tools, and the participant protections that learn more about what is being talked about
need to be considered before utilizing them. on social media are Social Mention and
Symplur Signals.
Here are some guidelines to consider, these • Meet participants where they are –
were adapted from the white paper developed You cannot open a website or Facebook
by inVentive Clinical Trial Recruitment Solutions, page for your study, and expect your target
titled, E-Recruitment: Using Digital Platforms, audience to find it and visit it just like that.
Social Medical, and Mobile Technologies to You must be strategic about where you
Improve Clinical Trial Enrollment.3 place ads, pop-ups or posts that can then
link individuals to your study page. Your ini-
• Know your audience – Similar to any other tial online monitoring really comes into play
recruitment approach you should begin by here. Using the information gathered from
understanding your target population. Using this monitoring, place relevant ads in popu-
an online platform for recruitment is no dif- lar websites, and maintain an active social
ferent. It is recommended that you spend at media presence in those outlets that are
least one month monitoring online platforms popular among your target audience. Creat-
to know where your target population can ing an online presence can take some time,
be found and what they are talking about. As so; consider partnering with an advocacy
you monitor, look for what websites and so- and community groups or organizations to
cial media platforms your target population build on their online network and estab-
are utilizing. This will indicate potential web- lished community trust. Posting your study
sites to advertise your study on or you may ads on their website and social media out-
consider opening a study page on Facebook, lets can reach many people quickly.
12 Tips and Tricks for Successful Research Recruitment• Diversify – You must cast a wide net in order they can learn more about your study, such
to reach your recruitment numbers. Not only as inclusion and exclusion criteria and con-
do we suggest that you utilize different re- nect them to the study team. It is not rec-
cruitment methods such as flyer distribution, ommended to screen for eligibility criteria on
clinician referrals and digital platforms, but social media due to privacy issues. Howev-
we also suggest using multiple modes of er, if an online pre-screening is desired, it is
communication within each of these meth- important to use a secure tool where people
ods. You want to be consistent and reinforce can report private information.
your message through different outlets.
• Ensure compatibility – Digital platforms
Recruiting on different online mediums can
are fantastic, when they work properly. If the
be less expensive than doing so with other
material, video or other information you are
recruitment methods given that social me-
displaying online doesn’t display quickly and
dia tools are free of cost (unless you want to
clearly you will most certainly lose an oppor-
purchase an ad, of course).
tunity for recruitment. Before investing time
• Messaging – The same rules about com- and money on a mobile recruitment tool
munication apply to digital platforms as they ensure that it will work on multiple digital
do to other recruitment methods. Knowing devices in an efficient way. You want to be
your audience is very important as you craft responsive to people’s time and current use
the key messages for your online ad, web- of technology.
site or social media page. You will get a good
If you find that you still need further support
idea about what language to use (and not
in this area you can request a consultation
use) and how to use it when you conduct
from the SC CTSI Digital Innovation and
online monitoring – what words are your tar-
Communication core or the Clinical Research
get population using to describe the health
Support core by visiting, www.sc-ctsi.org. The
condition you are researching? You want to
SC CTSI can provide support in the utilization of
avoid research and medical jargon. Also, be
digital approaches and online communications
sure to include a call to action within your ad
(digital, social, mobile) such as:
that prompts the reader to complete a sim-
ple action to become involved in the study.
• Developing clinical study recruitment
Also, highlight some benefits of participat-
strategies (digital, social, mobile)
ing in the study that would be attractive to
the study population. The colors and images • Establishing a web presence to build your
used in the advertisements are equally im- reputation, e.g., attract collaborators and
portant. As was mentioned before, getting study participants
feedback on your outreach tools (including • Using crowdfunding platforms to obtain
online messaging) from your target audi- seed funding
ence or those that work closely with them
• Managing IRB approval
is invaluable. It is important to know that
federal and state laws govern social media • Electronic consent
recruitment activity. In addition to Common
• Managing your online reputation (i.e.,
Rule, FDA regulations, HIPPA and HITECH
responding to negative feedback/reviews
may apply.
online)
• Make it easy –Digital platforms present
• Using novel metrics and tools to measure
many opportunities to facilitate and auto-
Digital Scholarship activities, and including
mate the recruitment process. For example,
this type of data in academic performance
a simple click for example can take an inter-
reviews
ested participant to your study page where
13 Tips and Tricks for Successful Research RecruitmentOther tools that can also provide digital 2. Scheduling social media messages and
recruitment management services for clinical automatically publishing them on Twitter
trials include Trial Spark and Trial Promoter. and Facebook.
3. Monitoring engagement measures for
• Trial Spark’s services include: development
each social media message.
of custom landing pages, recruitment
management, patient registries, targeted 4. Providing a REST API that allows clinical
advertising campaigns, electronic data trial data to sync with an institutional
capture and analytics, and data insight. clinical studies directory or other
database.
• Trial Promoter is a free, open-source tool
developed by the SC CTSI. It automates To learn more about Trial Promotor, visit
the process of clinical trial promotion, via trialpromoter.org. For more information on Trial
Twitter and Facebook by providing support Spark and other social medial platforms refer
with: to the SC CTSI guide, Maximizing Impact:
Leveraging Digital & Traditional Tools for
1. Importing clinical trial data and message
Recruitment and Retention Success.
templates to generate customized social
messages.
Large Clinical Trials
It is particularly important that early planning for find out how many patients in the Keck and/
a recruitment strategy occur for large clinical or CHLA electronic health record(s) meet
trials given the cost associated with such trials your study criteria. Upon IRB approval, you
and the high participant enrollment that is can request contact information for the
expected. In this section, we will discuss tips potential participants of your i2b2 query.
and approaches for recruiting for rare disease It is important to note, however, that no
studies, engaging physicians for referrals, protected health information is provided by
accessing medical records and research i2b2, but it can help you identify where and
registries, and research recruitment how many patients fit your criteria to better
campaigns and media options. inform your recruitment goals. For more
information and to access i2b2 visit the SC
Conducting feasibility study to determine if your CTSI website at www.sc-ctsi.org.
study is even possible given your recruitment • Another tool available to researchers is
resources is imperative. There are tools and the Los Angeles Data Resource (LADR).
support services available at the SC CTSI that LADR is a joint project of major Los Angeles
can help you in this process. health care provider organizations. This
project aims to enable clinical investigators
• The Clinical Trials Units (CTU) at USC and to explore the size of potential research
CHLA are a single point of access to advice study cohorts across each participating
and assistance for developing, activating, institution. By integrating medical records
conducting and reporting clinical research and clinical research data, investigators in
studies and clinical trials. You can request a the greater Los Angeles area are able to
consultation online at, www.sc-ctsi.org. find sets of aggregated patient information
through a web-based application. For more
• You can also access a free clinical study
information and to access LADR, you can
planning tool called i2b2. It is a self-service
visit the SC CTSI website or www.ladr.org.
cohort study tool that allows you to quickly
14 Tips and Tricks for Successful Research RecruitmentRecruiting for Rare Disease Engaging Physicians for Patient
Recruiting participants for a rare disease study Referrals
can be difficult. A feasibility study and the use Getting access to a patient population
of the tools above (i2b2 and LADR) to identify beyond your own patients is not always easy.
where and if sufficient patients are available in Physicians are protective of their patients, as
your region is important. they rightfully should be. If you are interested
in engaging a physician, there are three
Besides using medical records you may also common options: 1) collaborating with a
want to consider partnering with an organization physician at another site or department as a
that focuses on a specific disease or patient co-PI in order for him/her to access his/her
population such as the Multiple Sclerosis patient population, 2) asking physicians to
Foundation, March of Dimes or the Sickle Cell refer their patients, or 3) engaging a physician
Disease Foundation to name a few. Follow for permission to recruit at their clinic site.
the communication approaches mentioned
above when contacting these organizations. The SC CTSI Clinical Research Support and
Their established networks coupled with the Community Engagement cores can help
their community and social media presence you identify and connect with physicians. You
can help you reach your study population can visit the SC CTSI website to request a
in a much more targeted and efficient way. consultation, www.sc-ctsi.org. By far however,
You will always find more success in getting the most effective method is communication
organizations to disseminate information between a physician/researcher to physician/
about your study to their network, than getting researcher, and direct communication can
individuals’ contact information. often be the simplest and most successful
engagement strategy.
It is also possible that individuals are actively
seeking open clinical trials for themselves or If you want to reach several physicians at
for a loved one. This is particularly true for one time, you may consider contacting a
rare diseases. Therefore, make sure that your physician group to ask if you can be added
institution’s website has updated information to their meeting agenda to present your
about your study and that it is being displayed study. As you prepare to contact a physician,
in a clear, community friendly way and in keep in mind the tips discussed above in the
a prominent or easy to navigate location. Communicating to a Potential Community
Although you may have your study registered Partner section. You should have a one-page
on the clinicaltrials.gov website, keep in mind summary of your study and the study flyers
that most people are more likely to search available for their review.
through Google or an individual research
institution’s website. Making your study
Recruiting from Medical Records
easy to find online is key. If you are building
Medical records are never made available
a separate study website, it is important to
to others, other than the patients’ medical
consider search engine optimization (SEO).
provider or authorized medical or research
SEO is a strategy that improves the likelihood
staff. Therefore, you would need to engage a
of your website showing up in an internet
physician as a Co-PI in your study in order for
search list based on the common keywords
him/her to access his/her patient population.
used on the site.
15 Tips and Tricks for Successful Research RecruitmentHowever, using the i2b2 or LADR tools, will like these can reach a large audience, it is
allow you to query medical records to help you a passive approach to recruitment, often
find the number of patients at CHLA, Keck and/ ineffective for finding participants with
or other collaborating institutions that meet specific criteria.
your study inclusion and exclusion criteria. You
can also extract identifiable patient information Other effective and less costly options include
for screening or recruitment purposes if you advertising in clinic waiting rooms, hospital
have IRB approval to do so. hallways, and bulletin boards. Paying for ads in
community magazines that are often found in
doctor’s offices is also less costly and can get
Recruiting from Registries
you the participants you need.
Most researchers opt for creating their own
homegrown investigator initiated registries
because accessing existing registries can Social media such as Facebook, Twitter or
be difficult. However, creating, populating Instagram can be one of the most inexpensive
and maintaining a registry can also be a ways to advertise your study if you know how
huge undertaking. You may want to begin by to use it correctly. Facebook can be effective if
contacting existing registries to ask if they can you connect with existing and popular disease
disseminate information about your study to specific pages or pages that are popular
the people in their registry. As mentioned earlier among your target population. Having people
you will always find more success in getting forward or re-post about your study can be
organizations to disseminate information a good way to recruit. Those affected by a
about your study to their network, rather than common illness, in particular those affected by
getting individuals’ contact information. A list rare diseases often form very strong and close
of national registries can be found at https:// knit communities. A re-posting by one person
www.nih.gov/health-information/nih-clinical- can result in many research participants.
research-trials-you/list-registries. To enhance the reach of your ads/posts on
Twitter or Instagram, using appropriate or
popular hashtags can help raise awareness
Patient Recruitment Campaigns and
about your study (i.e., #icebucketchallenge,
Media Options #cancerawareness, #pinkarmy)
Investigator initiated research studies
normally do not have the budget for recruiting
via media campaigns on television, radio or Table 4 developed by Forte Research Systems,
large newspapers or magazines. These types Inc. that presents the strengths and
of recruitment tools are often used in industry weaknesses of the different advertising
studies where the sponsor initiates the research recruitment options.6
advertising. Although recruitment campaigns
16 Tips and Tricks for Successful Research RecruitmentTable 4: Advertising Research Recruitment Options: Strengths and Weakness
Advertising Medium Strengths Weaknesses
Digital • Lower cost • Slow buildup of reach
• Trackable • Some users “tune out” online ads
• Numerous advanced targeting options • A lot of competition for the audi-
ence’s attention
• Frequency in exposure to study
Magazines • Audience selectivity • Long lead times for space and
material
• Relative efficiency
• Slow accumulation of audience
• Allows for complex messaging
and reach
• Potential for re-exposure through
• Circulation patterns may vary by
pass-along and shelf life
market
Newspapers • Builds audience quickly • High out-of-pocket cost
• News environment • Relatively inefficient
• Short lead times for space and • Cluttered environment
material
• Circulations are in serious decline
• Short shelf life
Network/Broadcast • Sight, sound, and motion • Highest out-of-pocket costs
TV
• Highest reach potential of all media • Highest production costs
types
• A lot of competition for the audi-
• Immediate reach ence’s attention
• Audience selectivity in certain
programs
Cable TV • Sight, sound, and motion • Lower ratings on a per network
basis
• Audience selectivity by network
• More cluttered than broadcast TV
• Lower cost than Broadcast TV
• Extremely low local reach
Radio • Efficiency • Non-intrusive/background medium
• More segmented audiences - easier • A lot of competition for the audi-
targeting ence’s attention
• Lower out-of-pocket expenses • Not suited for getting an immedi-
ate response
• Low production costs
• More limited reach versus TV
17 Tips and Tricks for Successful Research RecruitmentAddressing Recruitment Challenges
Confusion About the Study to provide education to the general public,
Regardless of your recruitment strategy your target population and/or your community
(phone calls, TV ads, flyers etc…), if you do not partners about the research process and the
communicate clearly about your study and the benefits of research. Doing so could not only
individual’s potential role within the first few benefit your current study but will benefit your
seconds, then you have missed an opportunity future research recruitment efforts, as well
for recruitment. As we have mentioned before, as the recruitment efforts of your colleagues.
there is a general lack of awareness about Creating awareness about research in general
research and many misconceptions exist can be as simple as including a sentence or
among community members.9 Therefore, your two about what research is in your recruitment
challenge is to evoke interest and curiosity from tools, using it as an opening question to engage
an individual who may have fear about clinical a potential participant or training your research
trials. As we have said before, the best way to staff on how to talk about research when they
tailor communication for your target audience receive a question or confront hesitation from
is to hear from them. Taking your recruitment a participant. On the other hand, you may
tools to a community group for feedback want to take a more proactive approach, which
will provide you with a unique perspective could entail providing a brief research 101
and ideas you and your team may have not workshop, developing a research awareness
considered otherwise. campaign for your target population, engaging
your academic/research/medical institution to
Lack of Awareness include research information on their website
Similar to confusion about the study, lack of and in clinic waiting areas are just some ideas.
awareness about the condition or topic you
are studying can become a barrier in reaching Lack of Access
your recruitment goals. There may be a need to The literature suggest that minority groups are
use simpler or more commonly used terms to not less likely to participate in medical research
describe your study topic, or you may need to as is often assumed, but rather they are less
include a brief introduction about the condition likely to be asked by researchers to participate.8
you are studying, what it is, its symptoms and Perhaps, physicians or research staff do not
why it is important, and you may even need approach certain populations due to language
to include visuals of what this condition looks barriers, assumptions about their willingness
like. For example, in a study recruiting patients to participate or the idea that they may need
with eczema, it may not be enough to say, to spend more time to explain the process or
“Do you have Eczema? ....” You may need to the study topic. You need to think about what
include photographs of what eczema looks like you may need to do differently to bring the
in White, African American, Asian and Latino information to the population you are trying to
patients (if your criteria include these racial/ reach. These questions will help you start you
ethnic groups). off: Where do they congregate, who or what do
they trust, and what is the best way to present
As was already mentioned, there is also a the research opportunity so that everyone
lack of awareness about research and clinical who meets your research study criteria has
trials in general that can become a challenge equal access to your study information. How
in your recruitment. Depending on your do you make sure you are reaching certain
timeline, you’ll want to consider investing time populations? You got it! Ask them!
18 Tips and Tricks for Successful Research RecruitmentPersonal Objections, Fear, exist”.6 Fear, distrust, suspicions or myths about
research can also become so ingrained in a
Distrust, or Suspicions
person that it becomes a personal objection.
Distrust in research is a real challenge. Begin
Research is voluntary and therefore there
by recognizing that the fear and distrust that
is not much one can do to recruit individuals
exists is valid. There are several examples in
with personal objections to research. However,
the history of research (i.e., Nazi experiments,
there is a possibility that by engaging
Tuskegee Syphilis study) and others more
individuals in conversation and clarifying any
recent (Guatemala Syphilis experiment, HIV in
misunderstandings you can get them to change
pregnant woman study in India) that have given
their mind or simply be more open to research
research a bad name. It really does only take
in the future. Training the research team about
a story in the news or one bad experience to
how to respond to these objections is very
make someone or an entire community turn
important. Learning and practicing the proper
away from any future participation.
response and approach is important to creating
a positive research culture in the community.
There are also researchers who have engaged
It is a fine line that one must keep in mind in
the community in research but never return
these situation to ensure you are not being
with the research results (helicopter research).
coercive or tempted to embellish the research
These instances make fear and distrust even
benefit of your project.
greater barriers to conducting research. How
do you address this challenge? Be prepared to
answer questions like: Keys to Retention
Participant drop out is unavoidable. Participants
• Will I just be a guinea pig? may drop out for a number of reasons such as:
• Lack of motivation
• Will they sell my blood?
• Difficulty complying with research protocols
• Why are you just focusing on my ethnic
such as clinic visits and other study
group?
procedures
Be willing to ask a hesitant participant about
• Health complications
the source of their hesitancy, and; several
questions can help clarify this issue: What is • Work or family life changes, loss of
their understanding of research, what is their insurance
hesitation due to, have they experienced or
• A bad experience including a negative
heard of anything negative in research? It is
interaction with a research staff
also possible to address certain fears held
by the particular population you are trying to • Adverse effects
reach in your recruitment materials, if clear • No positive effects of the study intervention
and appropriate messages used. How do you
Participants may drop out by notifying the
identify those fears and how do you address
research team that he or she wishes to drop
them in your recruitment tools? You guessed it
out or they may simply not show up to research
again! Ask them.
activities or not respond to any outreach efforts.
There is not much one can do about the latter.
Dealing with personal objections can be
However, if given the opportunity to speak to
difficult to overcome because of the influence
the participants, you can identify their reason
of factors outside your control. “For some, the
for dropping out which can inform your current
cost associated with participation and the time
and future retention efforts. You may even be
away from work are too great. Other times,
able to clarify any misunderstandings and keep
it may be a deeply rooted personal belief
the participant in the study. Below are some
that standard care is better. And yet, in other
tips on how to increase your retention rates.
situations, language of communication barriers
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